Familial OM

Posted By
4/5/2012 12:30pm
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Replies: 7

Hello,

I wondered if anyone as experinced multiple family members with OM?  My son was born with and Iris nevus in 2007 and was seen by and Ophthamologist a couple of weeks later.  The doctor told us at the time they were common and we would keep a close watch on it because they have the potential to turn malignant. 

At that time my sister had a spot in her eye that I thought she should get checked out because it had started to get visibly larger, and because of what my sons doctor had told me she should be watched also.  She has been monitored every year since then and more often recently when it appeared to have grown last year.  She has been seen by a couple of oc. oncologists.

Last July I started seeing a flashing light in my right eye and went to see a local Oph.  He believed that it was a hemangioma and sent me on to a retina specialist.  The retina specialist believed it to be choroidal melanoma and sent me on to a ocular oncologist.  The oc. oncologist has been monitoring my lesion since then, and it wasn't until my appointment last week that it showed growth with sub-retinal fluid also.  I will be getting my lesion treated with plaque therapy.

I wondered if there were any other families with similar situations.  My oc. oncologist recommended that my son be watched closely also, so he had his first documented pictures yesterday by a local oph.  If anyone has been in a similar situation I would really appreciate any information you can give about this seemingly familial link.

Thanks so much,

Ashley

abrown - (4/7/2012 - 12:20pm)

Thank you Esther! I appreciate it.

Ashley

Anonymous - (4/13/2012 - 6:09am)

Hi Ashley

I was diagnosed with OM in February last year and had plaque therapy. It sounds like with your family situation, you need to be more vigilent than most and it is a very serious diagnosis  From experience and research, you will need to take a proactive role in your treatment and eductate yourself as due to the rarity of the condition, unfortunately many Ophthamologist's, no matter how well meaning, kind and sincere, do not know all the details that you need to know both to be proactive with early diagnosis, treatment options, follow up scans and treatments if it does metastisise to liver.  I can't plead with you enough to educate yourself as much as possible.  You may have a great one already, however I have heard too many stories of people, who have died early due to well meaning Ophthamologist's, who aren't familiar with the full nature of this condition and don't want you or your family to be amoung those statistics and makes me both sad and mad that this still happens and hence this note.   

I would strongly recommend you join this list serv to begin educating yourself: http://listserv.icors.org/SCRIPTS/WA-ICORS.EXE?SUBED1=ocu-mel&A=1 which is a group of a few hundred of us whom are going through exactly what you are going through and the pitfalls to avoid and the best oncologists who specialise in OM, who will give you the treatment that you need.

 .  YoYou can subcribe and unsubscribe if you wish at any time.  If you cut and paste your query above, you will learn so much for your sister, son and yourself.  On a very basic level, I am not sure what your doctor has told you, however did they offer or mention to you the option of genetic testing of your OM.  This will help tell you if it may be more agressive or not.  Once you have plaque therapy, you do not have the option of doing this.

The risk for metastasis varies based on a number of factors including the size  of the tumor and it's genetic makeup. In general, the rate of metastasis can be as high as 25% over 5 years and 50% beyond 10 years. Long term survival after metastasis is what is rare. This can be a very agressive disease.

Hopefully this is not all a bit too much, however it is your life you are dealing with and want you and your family to have as much as possible.

All the best with everything.

Paul

 

 

 

    

Sara - CURE OM - (4/14/2012 - 1:29am)

Dear Paul and Ashley,

If you are looking for physicians who specialize in, or have a good amount of experience in, ocular melanoma-- we have lists of such physicians on the CURE OM website (see the link below).  Our website, including these lists, has had a great deal of input from the CURE OM Scientific Steering Committee and other experts in the field.

http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanom... hope this is helpful to you.  

Please do not hesitate to post with additional questions.

Warmly,

Sara - CURE OM

Sara - CURE OM - (4/14/2012 - 1:30am)

sorry, that link didn't seem to load correctly....

 

http://www.melanoma.org/learn-more/types-of-melanoma/cure-ocular-melanom...

 

Sara - CURE OM

abrown - (4/15/2012 - 4:27pm)

Sara,

 

Thanks you also for the link!

Ashley

abrown - (4/15/2012 - 4:25pm)

Paul,

 

Thanks for all the information.  I will definitely check out the list serv you linked.  My ocular oncologist does do the genetic testing.  I have heard his name mentioned a few different times on the other bulliten boards that I am a member of, and so far I have heard a lot of positive things about him.

However, I have already found that I have to be my own advocate.  This has been a challenge for me and I am continuing to work on it.  I appreciate every piece of advice or information that everyone has given me.  There was so much not told to me during my appointments that I would have never known if I hadn't joined websites like this and asked questions from people going through the same situations. 

Thanks againg,

Ashley